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Ive just been diagnosed with BIH

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Guest
Guest

hey, im a 22 year old girl who has just been diagnosed with bih, after suffering crippling headaches for over 5 years. many a time i went to my doctor and told him bout these headaches, and many a time a was told it was stress or there was nothing wrong with me. i've been out hospital for nearly a week now, when i was in they did a CT followed by a LP then a CT venogram, now im seeing the neurologists at a differet hospitals, the symptoms are coming back plus im not reacting well to the acetazolamide, but im too scared to go back to the hospital incase its back. i know it sounds stupid, but i dont think i can go thru this on my own. i cant talk to any of my family because they just dont understand...... please help??

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    hi, sorry to hear you are suffering, my son has BIH, he is 12 and we just found out last week, he is having mad poo's and vomiting, he has low salt levels in blood and we have to go back into hospital again in the morning cos he just isnt well at all., his MRI scan was normal and other bloods clear but he has BIH, they have said being overweight for his age hasnt helped his condition so we have to help him lose weight.

    my son also had to have a LP, after 2 failed attempts they put him to sleep and succeded. it is very scarey going through this and just know your not alone there are others out there. try to find someone close to you to confide in even a nice GP can sometimes be a help. try to be positive even wen you are tired and down, try and think, i tell my son when he is felling low that there is always someone else worse off, try and have something to look forward too even if its just a nice bubble bath and a mag! keep smiling....leah and jack(my son!) :D

  • Guest
    Guest

    Posted

    hi , my name is kelly , i'm 24 years old and have recently been diagnosed with bih after suffering yrs of excruciating headaches !!!!! before i was diagnosed i had a really bad headache that made me quite ill which this then encouraged me to visit my dr yet again as i had done all the time i'd had these headaches ...she told me to go for an eye test , which i did , this showed that my optic nerves were swollen behind my eyes which sugested i'd got some pressure on my brain , i was then admitted to hospital that day for a series of tests eg: ct , blood tests , and ofcourse the dreaded lumbar puncture , this was attempted 3 times by 1 dr who was unsuccessful in doing it , and as i was so distressed and bruised he decided it was best they tried the next day ....thankfully my 4th attempt worked , i was told the pressure of fluid was 36 which was double the amount of what is should of been anyway after the lp i was discharged but given an appt to go back for a mri scan (which was so frightening) as i didn't want to stay in any longer as i have 2 young children at home and i wanted to be with them . i have had my results back which shows everything is clear but i've been put on acetazolamide 250mg tabs and have got to see a bih specialist at the queen elizabeth hospital in birmingham soon . the tabs are giving me some strange side effects though such as i've got 'pins and needles' in my hands and face and left foot all the time and i can't taste the fizziness of any fizzy drinks i have as they all taste flat ! do you have any of these problems ? don't know how long i can put up with these side effects for !! anyway hope you all feel better soon , nice to know i'm not the only one that suffers with bih x
  • Guest
    Guest

    Posted

    hi i am am 22 am was also recently been dignosed with BIH na dha 6 failed attemps till finally getting someone that could do one as i have a curved spine and have been put on the same meds and get nube feet all the time and all fizzy drinks taste like carbornat (the gas that amkes it fizzy) and wasnt sure wot was couseing that so am glad to see im not the only one
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